Test results

I received a call from a nurse in the cancer and blood disorders center this morning. The tests showed that Ian does have mild hemophilia. His factor 8 count was 45 the first time and 37 on Tuesday. A normal count is between 50-150. We meet with Dr. Bennett, the hemotologist, February 22 to determine what methods need to be used during his surgeries.

Life without passie

Yesterday at CHOA went well. We first went to the blood disorders and cancer center for Ian to have more blood work done. My mom held him while the nurse drew blood because I'm a wimp when it comes to needles and such. Then we all went to see Dr. Granger. He was very pleased to see Ian actually wearing the NAM. After some adjustments he was done with us. A nurse measured Ian: 12 lbs., 5 oz. and 23 5/8 inches long. Our boy is growing! He has been having trouble not being able to use the passie. He's gotten used to it helping him fall asleep and now all he has are his fingers. They do the trick sometimes, but they're not always what he wants. The past few days have been a little rough for him. He's been fussier and has become a little hoarse in the process. He's a trooper though.

New NAM

The NAM has been in since last night. After a rough start, Ian seems to be taking to it well. The first few times we tried to put it in he gagged and spit up. He was pretty miserable. DJ filed it down a little in the back, which seemed to do the trick. He fussed a little bit, but only because he was sleepy and wanted to snuggle(picture). It's kind of hard to tell, but he has his fingers in his mouth.

Being cute

Factor 8

A nurse from Scottish Rite called today to give us some of the test results. The von Willebrand factor and factor 8 were both low. We already knew about VWF, which is why he has been taking the Amicar. A low level of factor 8 is linked to hemophilia. I know very little about hemophilia, but I know it's more serious than von Willebrand's. Since the levels are only slightly low, we are scheduled to go back to the cancer and blood disorders clinic Tuesday for more blood work. The nurse stressed that factor 8 was low by a very small margin, but they would rather be safe. If he does have hemophilia, he will be given another type of treatment before his surgeries. This is all very scary, but at least we are finding out now. It could have been a lot worse had we gone into surgery unprepared.

http://www.choa.org//default.aspx?id=416
http://www.choa.org//default.aspx?id=305

Visit to CHOA

Everything went well Tuesday at Scottish Rite. Dr. Granger gave us the new NAM. Ian's mouth is still healing, so we'll probably wait to put it in Friday. For now he's enjoying his last few moments of freedom. Next Tuesday we should know more about the updated surgery date.

We are still giving Ian the Amicar and he still hates it. He not only cries, he screams. We have not found out any more test results. Hopefully soon.

Looong day at CHOA

Let's start from the beginning:

Thursday I called the RN at Scottish Rite. We were concerned about Ian's mouth taking so long to heal from the tooth coming out. The past few nights had not helped. We found him all bloody where he had attempted to put his fingers in his mouth. We figured they may give us some arm braces to keep him from touching it so much. Besides that, we're not sure what else to do. After taking to the nurse, we scheduled an appointment with the dentist for Friday morning.

DJ takes off of work Friday to make the appointment. We head out early and get to Scottish Rite around 10am. We meet with Dr. Thomas, who tells us that he is very surprised Ian is not yet healed. After all, it had been over a month ago that he pulled a pre-natal tooth. He decides it be best for us to go to the cancer and blood disorders center, which is also a part of Scottish Rite. His concern is that Ian may have a mild blood disorder, causing the sore on his mouth to take longer to heal. Our appointment with the hematologist is scheduled for 12:30 that day. This gives us just enough time to grab a bite to eat. However, neither of us has an appetite. After a slew of paperwork, we finally meet with someone. The doctor does the normal checks: ears, weight, length, eyes. He's weighing in at 11 lbs., 14 oz. and is 23 inches long. Our little boy is growing so quickly. We have to wait a while until they are ready for testing. After a while they come and I have to leave. I don't do so well with needles and such, so DJ stays with Ian. They take some blood to test him for hemophilia. We wait a while longer to get some results from the tests, some of which will take several days to get back. The main one we wait for is to know whether or not there is a problem, which takes about 40 minutes. They come back to tell us that his levels are low, but not by much. It is difficult to know if he does have a disorder because very little research has been done for children his age. To know for sure he will be tested again at 12 months of age. Right now they are treating him as if he has von Willdebrand disease. It is usually an inherited disease, but can also come from a mutated chromosome. VWD is the most common blood disorder, although little is known about it. For now, Ian is taking Amicar. This is an agent to replace the ones he lacks. Hopefully this will help his mouth to heal as it was supposed to in the beginning. After all of this with the people on the fourth floor of Scottish Rite, we head back down to the more familiar second floor: the craniofacial center. We see the dentist again, who cleans Ian's mouth of the scab that had formed again. We also see the surgeon and orthodontist, who give us words of encouragement. They tell us Ian will have to be given another similar agent prior to lip repair and palate surgeries to prevent any major blood loss. After a quick feeding, we hit the road around 5:30pm to brave the Atlanta traffic.

The past 24 hours or so have been pretty good. We have been giving Ian the Amicar every 12 hours. It tastes so bad he cries. No mama wants to see her baby cry. We have also been using Ace bandages on his elbows to keep him from bumping his healing mouth. His mouth is beginning to look much better. For now we ask that you keep Ian in your prayers. Although we are unsure if he has the disease or not, it's still a very scary thought. Having a cleft is enough for him to have to handle, but a blood disorder too? I have been having trouble thinking about all that he is going to have to go through. I don't want him to have to suffer any...from the multiple surgeries or from being picked on for looking different or anything at all. He's perfect in my eyes. I hope the world can see him that way.

Fussy baby

The little guy has not been in the best of moods lately. He's sleeping a lot. Combined with the fussiness, I thought he might be getting a cold, but he doesn't have a temperature. I wish I could make him feel better because it's so hard to see him cry and be unable to help.

Our next appointment at Scottish Rite is Tuesday. Hopefully by then his mouth will be healed. Ian keeps hitting himself in the mouth. It usually happens when he's sleeping. He'll get hungry, try to fit his fist in his mouth, and make his mouth start bleeding. Poor thing. I'll be so glad when we don't have to worry about it. I know Ian will be too.

One thing that makes him happy is his bouncy chair. He loves that thing! But only for a short amount of time. After about 20 minutes he's done with it, but whiles he's in there he coos and smiles and laughs. It's adorable!

Scab free!

The nasty scab has finally left us. Ian popped himself in the mouth while we were grocery shopping and that did the trick. We called Dr. Granger and left a voicemail. Hopefully we can go to Scottish Rite this week to get the new NAM, which should be finished by Wednesday.

Ian met his other great-grandmother yesterday. It's crazy how much a baby can make everyone get along. He was such a good boy, cooing and smiling at everyone. He's going to be such a little ladies' man with that cute smile of his. I'm glad we had the chance to visit with her and she seemed to be quite pleased as well.

In love

It's hard to believe how much you love your own child. I've heard about it so many times, but only since Ian's been here can I understand what everyone has been saying. I cannot imagine what life would be like without him. We are so blessed to have such a beautiful little baby boy.

No NAM

We went to Scottish Rite yesterday. Dr. Granger took another impression of Ian's mouth for a new NAM. Since Ian has been unable to wear his old NAM, his mouth has outgrown it. We go back in 2 weeks to get the new one. For now Ian is enjoying not having to wear the device. I just wish there was something we could do to get his mouth ready for surgery instead of waiting and having to push back the date.

Ian is in good spirits about everything. He keeps smiling more and more every day. His eyes look like they are going to end up being brown, but I guess only time will tell.

Almost gone!

Ian's scab is almost gone. Finally! Thank you for those who have been praying for him. For now we're still using the tape over his mouth since his gum is not healed enough for the NAM. We go to Scottish Rite Tuesday, so I'll post more then.

Two month pediatrician visit

Ian had his first round of shots today. Poor thing. He was a good sport about it. By "good sport" I mean he only screamed for a little while. No one likes shots, especially his mama, so I can empathize. He weighed 10 lbs. 15 oz. according to their scale, which differs a bit from the one at Scottish Rite. Either way, he's gaining like he's supposed to. Now if we can only get his scab to heal. He will try to stick his fist in his mouth or flail his arms around which makes it bleed and prolongs the healing process. Hopefully we will be done with it in the next few days so we can actually put the NAM to work.